Was Going to Just Recognize This One Myself: What a Difference 4 Years Make

First, this is not me today. This was me exactly 4 years ago terrified and scared laying in the ER as my legs had gone completely paralyzed. I usually kind of gloss over this anniversary of the beginning of the complete falling apart of my physical body as it was the beginning of a couple severely emotional years from me that needed to happen to be where I am today.

I’ll give you a tiny backstory of what happened and what the diagnosis was. About a month before my 40th birthday, which was April 17, 2016, I began to rapidly lose weight. I thought that was amazing and didn’t think about the fact that it’s a huge bad health warning sign. I also began having electrical pain on the top of my right thigh. I saw my primary care. She was baffled, but as the pain intensified over those short weeks, she said to call anytime as she was clearly concerned, but she was stumped.

At nearly 5 pm on April 27th, 2016, I was sitting in my psychiatrists office when my legs rapidly were losing feeling. I saw the time and said to the psychiatrist that I had to call my primary care. I was immediately put through to her and told her the electrical pain was all throughout my legs, but I also felt like I was losing feeling. She told me to go to the ER immediately and take an ambulance.

This wasn’t any big deal. I was fine. I’m just dramatic, right? I walked out of the psychiatrists office and fell over in the parking lot sealing my decision to go to the ER. I don’t know how I made it, but I pulled up at the ER front door where security asked what was wrong. I apologized that I couldn’t park my car as my legs were painful, but I couldn’t feel them and would fall over.

I don’t remember much except I’m sure the security parked my car and was whisked back to a room in the ER bypassing the dozens of people waiting. The regular ER doctor looked afraid. A neurologist showed up soon after who did the standard neurological exam that I apparently failed as I was immediately admitted.

I was told I was getting the “MS work up”. I didn’t know what that meant. A long day of full brain/spine MRIs that took 3 hours in that tube followed by a lumbar puncture had the neurologist come in on April 29, 2016 to announce I had transverse myelitis.

You say “transverse what?” It’s an autoimmune disease that your immune system attacks the nerves in your spinal cord with a huge inflammatory attack. I had my lesion in my lumbar spine, which actually classifies me as having a spinal cord injury. I was lucky. People with lesions in their neck end up quadriplegics. Some people with transverse myelitis recover. Some never do. I fell into that middle category with a partial recovery.

Transverse myelitis isn’t my main problem today. I have other autoimmune diseases as well as neurological diseases that have been diagnosed. I also have incredible assistive devices including my sidestix forearm crutches custom designed for people with disabilities to enjoy the outdoors and my beautiful sparkly pink custom wheelchair.

In those few months after my transverse myelitis diagnosis, all I could think about was getting back to normal life, which was a job that totally stressed me out no matter how much I loved it, and my multiple psych meds that were treating and creating problems that didn’t exist.

It was a painful couple of years as I had to quit that job, sell my house, leave a place I had lived for 30 years to go live with my family in another state. I was absolutely devastated.

The beauty is I met a psychiatrist who believed in me to begin the process of weaning me off the psych meds and all that time with my family landed me in intense trauma treatment that gave me time to really reflect on how I wanted to live my life. My physical body was miserable, but I didn’t want my mind to live in that constant misery anymore.

I am facing an urgent surgery in the time of Coronavirus exactly 4 years to the day of receiving my transverse myelitis diagnosis. It’s two days from now on my pacific daylight time zone.

Of course any upcoming surgery is scary, but I go into a surgery in year 3 of being psych med free. I go into surgery almost entering year 3 of being on a strict anti inflammatory diet. I go into surgery nearly on my 1 year anniversary of beginning iyengar yoga. I go into surgery just slightly after my 1 year mark of being inpatient in the medical hospital where I met a treating doctor who had transverse myelitis too and told me her inspiring story of hiking again with her crutches, the freedom a custom wheelchair in making her mobile, and she lifted her pant legs to introduce me to the concept of AFOs, which are the exact braces I wear to avoid foot drop that caused me to fall and break 7 bones in two years.

Most importantly I go into surgery recognizing that I will always be revisited with misery as a survivor of severe childhood abuse, but I also know genuine joy. I also enter surgery with people who surround me with genuine care and compassion that I worked to cultivate in a healthy way. I enter into a surgery appreciating my quirkiness as being unique and special.

I also know that my misery isn’t unique to being a trauma survivor. You can have a loving and supportive family and still be very pained as a couple people have honored me to get to know that.

I go into surgery knowing that it’s exactly 4 years apart, but I am vastly different. Trauma flat out sucks. It feels as though it robs you of your life force. It does until you take it back to be bigger and brighter than you could have ever imagined.

I still grieve not having family. I grieve that my childhood years should have been safe and supportive, but I was instead given plenty of horror that played itself out for years.

I go into my surgery with healthy fear and no matter the outcome and what the surgery says is causing these extremely troubling problems, I know I persevere. There will still be moments of “why me?” and anger and huge feelings of loss. I also continue to remind myself that joy is my human right no matter what.

Interesting the timing of things as it gave me time to reflect and give myself a huge self embrace to say I’m proud of myself.

Trauma recovery is never easy. Throw multiple chronic illnesses on top of it and life can feel unbearable. It doesn’t have to. If your brain is lying to you that you are terrible and need to hide, what is one thing you can do to counteract it? Yes, we are supposed to essentially be isolating in a time of Coronavirus, but it doesn’t have to equal constant misery. I still have my moments, trust me!

My traumatized rescue dog is finding his joy right along with me.

Love

Lizzie

No Cape Needed

I told my friend I was going to climb onto this stump and do some crazy balancing thing. She was pretty scared about my falling. She mostly knows me as a wheelchair user. I got up there and she said, “no cape needed”.

I take people’s words sometimes and run with them. It’s usually just in my head, but I thought about the idea of not needing a cape and how it relates to strength.

I’m having surgery in 3 days that has some big implications. The surgery was just scheduled before the weekend. I have admitted to myself and another person that it’s causing me a bit of fear and anxiety.

In my few days leading up to my surgery, I have been very active outside. I always have amazing nutrition with my anti inflammatory diet, but I have been doing it perfectly as I had to stop all my supplements. The extremely healthy food and mindfulness it takes to do this has been spirit lifting.

I enjoy pushing past the barriers that my disabled body has thrown my direction. I loved standing on a wobbly log on one leg while my friend compared me to a superhero. My physical strength in disability is a reminder and boost of my mental strength.

“No cape needed” made me realize I can admit I’m afraid to whoever I want. I don’t have to be a perfect model of strength in a superhero. I don’t have to smile and find the “silver lining” in what’s coming. I don’t have to be the smiling little girl who wasn’t expected to be anything but happy no matter how traumatic my growing up experience was.

So you might question if this is a fake smile in my picture. I will say it 100% is not. As I have explained to a handful of people lately when they ask how I can look so bright when life can be so hard. I simply say, “I live with one foot in joy, and the other foot in grief”. In being in both those places, you can simultaneously feel heavy and light. If I lived with both feet in grief, I couldn’t stand on my one foot in joy and smile genuinely.

Love

Lizzie

Emotional Snapshots

Pictures can be beautiful. They serve as reminders of fun things we have done. We can go back and revisit the past to see how we have changed, places we have been, celebrations we attended, people we once knew, or memories that bring up all sorts of emotions.

In the past several months as I have been able to get the assistive devices I have needed to move again, I have found lots of joy in having forearm crutches custom built for me by a company that makes them so people with disabilities can enjoy the outdoors. My custom pink wheelchair allows me to get around my house and go out without fear of falling over and to engage in life as my legs get numb and weak. I get to play wheelchair basketball.

My body doesn’t always cooperate. In fact, it rarely cooperates how I wish it would. When it does, I still take pictures, but I also take what I call “emotional snapshots”.

Yesterday, I saw a new doctor. I didn’t think much of the fact that they called the evening before to switch my telemedicine appointment into an in person appointment. I fully expected to have a conversation with him about my best route of immunosuppressants with the complexities of taking them during COVID-19.

That isn’t what happened. He said he wanted to see me in person as we had a lot to talk about after he reviewed my imaging and my troubling symptoms that I hadn’t found a medical professional too concerned about.

I look REALLY healthy. I also take exceptional care of myself and the me that is out is a me that feels well enough to go out. I’ve been on a strict anti inflammatory diet for almost 2 years. I have been diligently practicing Iyengar yoga for 1 year beginning May 7. I move. I manage my stress. I have some wonderful connections, yet I still feel very sick. My imaging of all sorts shows abnormalities.

This doctor was highly intelligent and printed my PET scan radiology report and explained it line by line with me. He told me what the numbers and medical words meant in regards to me. I reiterated my very horrible symptoms to him. I told him doctors/friends/family have a hard time understanding how sick I get as I just look so “good”. I’m proud of how great I take care of myself. I’m proud I smash through boundaries thrown at me. My doctor was proud of my efforts too. He also said to me, “you have worked your ass off to be healthy and still feel like shit. I’m sorry those are sometimes the only words I have sometimes”. I felt very validated.

I’m know I didn’t make this up in my head. Having troubling medical imaging backs my claim. I left the office with a promise of a phone call to schedule my urgent surgery to figure out what’s going on along with scheduling of multiple other tests. I asked when the surgery would be. He said, “I’m hoping for Wednesday”. This was just yesterday, Thursday. I left the office feeling relieved that I was heard.

I got home and the gravity and implications of this set in. I became a little anxious. My trauma tells me that everything about my health is “dramatic” as my mom felt sick children were a nuisance and dramatic. It’s something I have struggled with in navigating and advocating for my healthcare for years.

I got my phone call. Less than 24 hours after my appointment with this doctor, I had a pre op appointment at the hospital, which was early this morning. I also have to get a COVID test as the new protocol in these times is that it must be negative to have anesthesia. I have to have a CT scan so he can get to all the lymph nodes that showed up on my PET scan and others the day before surgery.

I got up very early. I was exhausted to get myself to my pre op. Hospitals are strange and not friendly places to go in these times. I won’t explain the process to even get access to the building, but it was weird. The tension was palpable. You can’t see anyone’s face anymore due to masks and protective gear. Leaving the building was weird too. I felt weird. The next order of business was to go get my CD of the actual images from my PET scan from the other local hospital system. I called and nothing about the message said they were closed. I arrive to an empty parking lot. I finally call and am on hold awhile where the lady tells me they have been closed a couple months and “should have planned ahead”. I explain my surgery was literally scheduled yesterday and have to have it for my surgery in 5 days. She said it would take 2 weeks. I have to get my best advocate self out even though I’m exhausted and finally get a phone number my provider can call to hopefully get the imaging in time. I go to the pharmacy to pick up my prescriptions that were called into a pharmacy across town. I’m so exhausted.

I finally made it home after what feels like a useless morning. I get a phone call from the hospital that I have to pay nearly $500 dollars Wednesday as my copay prior to my procedure for just the hospital part. Inquiring about a payment plan sends me to several people who know nothing except I have to pay. Squeezing blood out of a turnip while I’m fuming that I can’t afford to be healthy and get answers. I’m in an extremely frustrated and kind of helpless place.

I curl up in my little ball for a bit and fall into a deep sleep for about 45 minutes to wake exhausted. A couple more minutes of feeling sorry for myself motivates me to get up, throw on my hiking boots and load up my backpack with snacks, sunscreen, and water. I need an attitude adjustment.

So this is where my concept of “emotional snapshots” come in. I’m finding the best way for me to discharge very frustrated energy isn’t to calm with yoga. I like to take my crutches that allow my disabled body to march up hills and off I go.

So I take a handful of physical pictures, but this is going to be a rough week. I needed my emotional snapshots too. So this is where I’m doing something that brings me joy or peace or something in the range of positive feelings. I take in that mental memory to file away so when I feel awful, pained, ick, whether it be emotionally or physically, I can go back to my emotional snapshot of a time where I was flooded with peace, joy, or sometimes even pride.

I went out today as the coming week or weeks means I need plenty to remember emotionally as I recover and anxiously await my results.

I wish I could say my hike today brought on lots of positive emotional snapshots. They weren’t plentiful as I’m overwhelmed as well as grateful for what’s coming medically. I will say my emotional snapshot today was more about my strength to not just lay in my bed when that’s what I was telling myself was all I could do. I hold the emotional snapshot of my courage to be so exhausted and get up instead of just sink into what could have been a very justified pit of despair.

My photos might be wonderful. I can share them with others. I have my feelings of strength and courage to genuinely get me by that will stick in my mind.

Can you take an emotional snapshot of when things are easier to hold onto when life feels more rough or unfair? It’s honestly what gets me by.

I know I’m pointing to my hat where it says, “life is good”. Life isn’t always perfect and definitely full of pain for some more than others. I embrace the concept of life being “good enough” and what a wonderful thing to be alive and present in a body that hurts, a heart that feels heavy, and an entire mind/body/spirit that has feelings of fear for the upcoming weeks, as well as a body that has been severely abused. Life is good as I’m trying my best to live it as well as possible even in angst and limitations.

Never in a million years would I have found the “good” in a life that has thrown just a little too much. I also realize it’s ok to have joy in rough times. It’s our basic human right to have joy even when it’s hard as I can honor my grief simultaneously.

Love

Lizzie

What? You Noticed? You Remembered Me?

My trauma as well as many others managing it deal with feelings of not being noticed, heard, cared about, forgotten, invisible… I know cognitively none of those things are true as people’s actions prove otherwise often several times a day. My heart has a hard time. I told a friend recently that they could tell me how much they love me every minute of every day and would still have a hard time believing it. My biggest trauma cognitive distortion is that I’m not someone to be remembered as I have no impact on people or anything special enough to offer anyone to remember me.

It’s a pretty laughable distortion as I get many reminders of my impact on people. I work hard to tell people how they impact me as I know the significance of it when I get told.

I had a lot of reminders of my impact on people today. Multiple ones from surprising sources.

The most surprising one probably came from my old gynecologist. I wrote in a post several weeks ago about how I sobbed through a gynecological exam in early 2018 and how it was no big deal recently.

The gynecologist that I sobbed through my exam with left the practice to start a women’s centered functional medicine practice. I was sad not to see her again as I wanted her to see my changes I had made in so many ways.

Well she started following me on Instagram to my surprise. I’m forgettable, right? I have zero redeeming qualities, right?

I guess wrong as she took my Instagram post that said something like, “smile courtesy of lots of iyengar yoga and lots of fruits and vegetables. My greasy hair courtesy of social distancing. Take care of yourselves”. I added my several hashtags in regards to my diseases as well as my yoga and anti inflammatory diet.

So within minutes, I’m on my gynecologist’s story with the above picture of me with her added information. She also sent me a personal message saying I was truly inspiring.

What? She’s a doctor. I’m a disabled “nothing”. So I went with the wonderful fact that my old gynecologist that I sobbed through my exam over 2 years ago remembered me and used my own story on her functional medicine page business. She remembered.

The crass me who sometimes doesn’t want to be eloquent or insightful keeps telling myself, “forgettable, my a$$” as I’m contradicting old ugly talk in my head that doesn’t necessarily get counteracted with big beautiful words. Instead, my head calls it like it is! It makes me laugh as if you know me in person, I’m not one to swear often unless I use it in irony.

So I know many trauma survivors, or even people in general as we are managing social isolation that feel forgotten. Have you had a moment, no matter how tiny, where you can say in your head, “forgettable my a$$”?

I think my phrase combined with the laughter it brings me is bringing my importance and unforgettable reality from my head to my heart. That’s where the real transformation takes place.

Trauma recovery no matter how new or seasoned you are at it is a lifelong process. Every now and again, something actually clicks. Lucky for me I get huge clicks often lately. Too much pandemic time to think?

Take care of yourself as best you can.

Love

Lizzie

Jumping For Joy

Yesterday was my birthday. It was a nasty day for me physically. The new brand of my IVIG is not sitting with me well. It was going to be a pandemic birthday, so I wasn’t planning on a party, but I wanted to do something symbolic for making it through another crazy year. Instead, I had days of migraine, body aches, and chills. If I don’t get movement, my mood sinks. My mood was really bad despite a lot of love thrown my way and even some gluten free cupcakes hand delivered (celiac disease).

Every doctor, therapist, or anyone into exercise will tell you it’s a huge endorphin builder. If you have a body that has exercise available to it. Many people just think they can’t, except for a couple of diagnoses, exercise, even very gentle exercise is good for the mind.

I have a body that says I shouldn’t exercise. When my thoracic spine was fused in 2018, I rested for a few weeks. I bought a book for yoga designed for back pain. It had a section that gave steps to heal from back surgery. I very slowly began to do them until I was cleared to go back to regular yoga.

Gym style yoga isn’t my thing. The classes are usually large, so proper corrections can’t be given leading to injury. There’s a lot of comparing in gym yoga classes, so people push themself to be just as good or flexible as the person next to them. We all have unique bodies.

I saw an advertisement for an “alignment based” yoga class at a local yoga studio that was a better price than my physical therapy copay. I tried it and was hooked. It’s actually iyengar yoga.

Today I decided I would get up despite still feeling a headache and not much energy. I saw on the iyengar livestream schedule there was a class called “jumping for joy”. The class description said it was for everyone and a lot about bringing lightness to the spirit and letting your inner child out to jump. I was sold despite using my wheelchair the past few days due to completely numb feet. I didn’t think I could jump, but I did!

Part of what has been really important for me in my trauma healing has been getting inside my body. It’s really hard to do when you have trauma, but you add a fused spine, a neuro immune disease, a neuromuscular disease, some autoimmune diseases, and throw in a genetic neurological disease just for fun, being in my body is the last place I want to hang out. But I do.

I hate my body a lot of the time. After I do an iyengar yoga class, I am in love with my body. It reminds me of what I can do versus what I can’t.

I’m not telling anyone to become a proficient yogi. During this time of pandemic when most of us are basically locked up at home, what can you do? For me personally, the lack of being forced to go anywhere or do anything has put my perpetual feelings of being “lazy” aside and have been writing everything down about my day including physical activity, emotional events, cognitive activities, what I ate, etc to figure out my activity threshold. I’ve thrown in a ton of much needed rest too.

I definitely have sad feelings and the pandemic affects me in bigger ways than I thought. I also know I can’t control the outside world. I can only control what I’m doing with me right now. My best I can do is be good to me. I can accept the grief that nearly a week of IVIG symptoms caused me to lose. I can also accept my joy at trying something new today.

I wasn’t perfect at it like I always demanded of myself before, but I did try. I wish I had a before class picture. I probably looked a little stressed and sour. The teacher was successful, I was joyful.

Is there something you can do to cultivate some joy in a time of fear and uncertainty? I know I have huge fears, but I’m working to balance it out. (And I wasn’t always this healthy. I used to smoke more than a pack of cigarettes a day, lived on donuts and candy, was pretty overweight in an unhealthy way, and drank 12 diet cokes a day. This was only slightly over 2 years ago. Just so you know I’m real 😉) This is just what I do to lessen the misery and have some bright moments even in rough times.

Love

Lizzie

Ending My 43rd Trip Around The Sun

This was my morning epic yoga fail where I discovered multiple accidental somersaults just might be the cure for the pain of spinal fusion and degenerative disc disease. I should have made a video where I was laughing. Any takers for my new “physical therapy”?

What a year 43 has been. Plenty to grieve, lots of tears as well as some unexpected laughs, gains, victories, and I guess just the course that life takes. (A dear person pointed this out. Can’t take all the credit).

I had so many moments of wanting to give up, but I probably equally had more, to numerous more moments of wanting to conquer and be better. I didn’t succeed at lots in my year of 43, but I did overcome.

I managed to find iyengar yoga to manage my pain and feel strong 💪. I am excited for wheelchair basketball to begin again. I gained some insights into my health about what works and what doesn’t.

I close this trip around the sun with a heavy heart, but it’s also a full heart. You can be both sad and joyful, yin/yang, bad/good, but the most important is to stay in the middle.

My 43rd year ends with having some extremely special people in my life that I treasure dearly, knowing that I found ability in disability, and honoring that the past doesn’t always stay in the past.

I felt like it was a year of integrity, learning lessons, and while birthday eves always feel a little bittersweet to me, I look back on my year no matter how hard it was, to pat myself on the back and say, “you did pretty well Lizzie with all you have been handed”.

Love

An almost 44 Lizzie

A Picture of Strength: Maybe or Maybe Not

I had the realization that I was in the hospital exactly a year ago when a handful of neurologists were real with me that I was going to become a part time to perhaps, eventually a full time wheelchair user. I used my walker often, but I had a lot of pride and didn’t want to use it in public as “walkers are for old people”. For some dumb reason, using a walker felt more embarrassing than falling over in the grocery store parking lot where people threatened to call the paramedics. I just turned my falling over into a joke and a smile with a kind of sarcastic, “I’m ok!”

Physical therapy was failing me hugely as I could walk a few feet around my house while constantly having to sit down as my legs get very weak and just stop. Being a pretty positive person who likes to focus on what I can do versus what I can’t, I don’t think my doctors could get a sense of how much I was struggling. It’s hard to admit you are struggling when you’ve been put down and had “struggling” used against you. Trauma recovery is very confusing, even when you have so much of it figured out.

Yesterday was Easter Sunday in the US. I tend to enjoy Easter as it’s a sign of spring, going into a season of growth, and change from an earth that has appeared dead for several months (if you live somewhere with an actual winter and the northern hemisphere). Easter is symbolic of new beginnings, new hope, and freshness. That’s just my perspective no matter what I have believed or not.

Yesterday I was invited to join a group of Christian women that I was honored to join, but as they reflected on Easter from a Christian perspective, I found my own spirit sinking. I had nothing to say. If you know me personally, I never stop talking, which is probably to my detriment and been working on putting genuine effort in being a better listener for awhile.

I haven’t had trauma memories that bothered me in years. Things come up, but I can neatly tuck it away knowing trauma is my past and the present I live is safe and often joyful considering everything I manage. Memories of spiritual abuse (no worries, I won’t give details) came up for me, which are some of the darkest things that happened to me.

I thought I could neatly tuck it away too. I did my livestream iyengar yoga class and took this picture soon after as even though getting the gift of proper mobility with my super fancy “sidestix” forearm crutches and a wheelchair that came in pink that literally sparkles in the sun also came some grief. When I got my wheelchair, I posted this paradox of the happiness of mobility as well as the grief of making such a major life shift on social media. A very old friend with his own health challenges commented something along the lines of “think of the biceps you’ll get”. So I was having a moment of enjoying my physical strength from not only using my upper body as my way to move, but also that it is nearing my 1 year anniversary of beginning iyengar yoga.

So I had my moment of pride, fed the dogs, and fell into a blissful sleep for about 4 hours at a somewhat regular time, about 7:30 pm instead of 4:30 pm. I felt victorious.

Then I woke up realizing that spiritual abuse is a beast. I haven’t really talked about it with anyone as it becomes “too much” for professionals. I would never discuss it with friends, especially not the details. I don’t want to tell the details to anyone actually. It’s locked up in my box that holds my distant past as I know it’s the past. I’ve dealt with enough of it that it’s not troubling anymore. Somehow someone found that key and unlocked that box holding this beast. I just mention it as I don’t want people to ever feel alone like I did for many years thinking I was the “only one” for much of what I went through.

Ironically, someone I know from the past reached out to me yesterday evening who knows I have a really traumatic background and asked if I would kind of talk to them about my spiritual abuse as they feel alone and wanted to know how I cope. I told them I would gladly talk to them, but it’s not a text conversation to be had and my way is definitely not the perfect way. This feels especially as I’m overwhelmed right now with this nasty box that has been opened for some reason on a day that usually represents so much that is new and fresh.

I really am ok though. Several years ago, this sort of thing would have devastated me. I would have felt lost and trapped, feeling like there was no way to escape the pain of the memory. Well, there is no escape. I only have to continue to go through it and feel the awful feelings associated with it.

Has my world stopped? Obviously not if I could still take my livestream iyengar yoga class and get a few hours of sleep. But it’s 1 o’clock in the morning feeling perplexed why I’m being given this “gift” of a painful memory when I already have plenty to manage.

As I said, I’m ok. The sun will come up. I’ll go about my business of what a Monday brings for me, paying medical bills, food prep for the next two days of lengthy infusions, maybe a phone call to a friend on the east coast, and certainly another iyengar yoga livestream class before I have to take a handful of days off. Some people breeze through IVIG. I’m not so lucky. I have at least 2-3 days post that I am eating anti nausea medication like candy, taking the maximum amount of prescription migraine medication, and tons of Benadryl as I’m not totally sure what it does, but it’s recommended round the clock for a day or two to help with a nasty allergic reaction you can get to it. So for those 4 days a month, I wish for death while also knowing that once it passes, I get a couple weeks of relative normalcy.

So everything is status quo in my world. I just now have to continue to have the unpleasant pain of a memory I buried and left behind when I decided I was going to live differently. It’s not causing me significant distress, there’s just the knowledge I’d rather not think about. In a time of social distancing, I don’t have lots to distract me. I wouldn’t talk about it anyway.

Just a weird and kind of cruel way that trauma keeps on giving. I suppose I should just focus on how I’m so much more ok with this popping up now than I ever have been before. Like not even comparable to how different and ok as possible my response is to something so ugly. It’s unfortunate, but it won’t ruin me. It won’t even change much about me, except I might become more introspective, more quiet, and a little more distant, but good timing when we are all supposed to be distant anyway. So just leave me alone!

Just kidding. Please don’t. Pain is pain and no one should have to walk, gimp, or wheel through it alone. A reminder for myself and others to reach out. You don’t to talk about the hard stuff, but it’s always important to not feel alone.

Love

Lizzie

Nope, That’s Not Quite Right

I will admit that I had a great day today. I got to be with a friend while we socially distanced in nature. It is always amazing to be outside. It’s wonderful to be outside with someone who rarely gets an opportunity to go and exclaims over everything. It made it more meaningful for me as I stop noticing things as going outside is built into my self care routine.

I got home with just enough time to fill my water bottle, text a couple people, post my beautiful pictures on social media and collapse into deep sleep for 3+ hours. I’m having a hard time writing this as it’s hard to stay awake. I love showing how I conquer chronic illnesses and chronic pain by how I move.

I appreciate that this is my blog and can say my truth. Social media is a tricky thing. If I post pictures of my reality most of the time, which is terrible fatigue from autoimmune and inflammatory diseases and the fact that my walk in the woods meant I spent the rest of my day managing bad spasticity in my legs where they contract, straighten, and my toes curl painfully into awkward positions after movement, I can get called “attention seeking”. If I post my victories, I have been accused multiple times of not being sick and lying and attention seeking for that too. It’s a tricky game to play as no one sees or knows my reality but me.

When I woke up this morning, it was if I could feel the rods screwed into my spine. It was some of the worst back pain I’ve experienced in a very long time. A lot of people who have had back surgery that hurts months to years post surgery (I’m 17 months out) stop moving as it hurts. I know if I succumb to the pain, it will only hurt more and movement will become harder. So I didn’t lay here this morning (well I felt sorry for myself for a few minutes definitely), I got up.

Getting around my house and preparing the picnic for my friend and I hurt. I also knew the more I kept moving, the more I will keep moving.

People say to me often, “you look too good to be sick” or “you do too much to possibly have anything wrong”. I think this will be my new retort. A simple picture of the inside of my refrigerator with six bottles of IVIG waiting for infusion next week with my bag of medical supplies where I’m a grateful owner of my own IV pole, IV pump, vials of steroids and Benadryl to be injected with prior to my infusion, a couple bags of IV saline, and a plethora of other medical supplies to do my infusion. I’m guessing most “healthy” people don’t keep these items handy. Does everyone keep this in their refrigerator? I sure haven’t my entire life.

I am absolutely not complaining. Since I fell out of my wheelchair last October and severely sprained both my wrists, I have been struggling badly to get back to my regular abnormal. I’m honestly sitting in gratitude that the past several days have given me 3-4 hours out of bed. It’s better than what it has been in forever. I’ve been very active several of those days. I’m glad to have been born with a body that is naturally strong. I wonder with myself at the fact that sometimes my visibly and invisibly disabled body can be stronger at many things than I ever was in health.

I know tonight I’m too tired to make myself the dinner I really need. I’ll settle for some fruit and nuts, my evening supplements, a medication for spasticity, and another I take for Epstein Barr virus. I’ll crash for 10-11 hours making it probably about 16 hours of sleep for my day.

As I said, I’m grateful for having the ability to do wonderful things. My Facebook feed will be filled with a false representation of my life’s entirety, but isn’t that what Facebook is for? If there’s one thing I know about social media is that you can’t win. I might not be winning at blogging, but my stats show otherwise.

So beautiful hiking photos aren’t quite right, but I also know for me, it’s what I like to remember too. I will take my intense fatigue and misunderstanding of many to know my reality. I take incredible care of myself through my strict anti inflammatory diet, exercise, and maintaining hope. I don’t hope for perfect health. I just hope to continue as I am. I hope to find the wherewithal to do more than go outside. If not, I have hope that I will continue with at least that. I know hope as more and more people understand and embrace me when I explain that sometimes I absolutely can and others, I absolutely can’t. The best words I get in regards to how my body operates in such extremes due to the nature of my illnesses is, “Lizzie, I understand” and get invited again.

I push through the pain as I might be debilitatingly exhausted at the moment, but my back hurts less, my heart feels full, I’m proud of the 4 total hours I was up today. I will joyfully fall asleep with the good memories of my day versus thinking of my spastic legs and the pain it brings. I’ll have content dogs if I can get some energy and strength to make them dinner.

And tomorrow, I will take my medication for my autoimmune fatigue that allows me the energy for wonderful moments of movement to do it all over again as that’s what I do. Along with being called “attention seeking” and that “your illnesses are fake”, I have also been called brave, tenacious, admirable, a warrior… I will choose to remember the positive of people who admire how I embrace a painful and messy life. We all deal with hard stuff and if watching me get through mine helps you manage whatever you are going through, I happily embrace my naysayers too.

Now I have to get back to sleep. Warrior through the difficulties. No one said life would be easy, but there are plenty of moments that make it more than worth it. Take care of your basics during a pandemic and work to feed your soul just a little however that looks for you.

Love

Lizzie

An Energetic Discharge

I fully expected today to be a bad day, a sad day, a day full of ick. I had something big to grieve today. I don’t want to go into too much detail about it as I want to talk about what I did with it instead.

Today was a “traumaversary” of sorts from a relatively new sadness. Several weeks ago, I was dreading this day. I asked a couple people who knew what this day was to be with me. Well then, we had a pandemic and being “with” people wasn’t going to work. A FaceTime chat about it or zoom from home wasn’t what I wanted. I was going to go out to do something to celebrate this day as even with the sadness that accompanies this day, it’s a day to celebrate too.

I made a plan to go out and sit under a tree and fill out a touching fill in book for the person I’m grieving and celebrating today as this was one I was going to get through on my own. My life has been a lot about adapting these past couple years as I worked to heal my body, mind, and spirit. So a pandemic has led a lot to adapting too.

My plan to sit under a tree got shut down by gray and drizzly weather. Not so bad for walking in. Not so great for sitting and writing. Instead I sent a lot of love towards this person. I pictured him being happy. I arranged the dogs to take a celebratory photo to send.

Do you ever get that kind of spinny feeling in your chest that used to seem like anxiety to me? Today it feels like my body is giving me a signal to do something. I was very “spinny” towards the end of the afternoon after feeling a lot of intense emotions of love, unfairness, joy, grief, and the list goes on. It never felt like anxiety, but I wanted to move, and I wanted to move quickly.

Ever since I was diagnosed with transverse myelitis nearly 4 years ago, I haven’t had access to high intensity exercise as my body just can’t. I’m very powerful in my iyengar yoga, but yoga, even with as intense as it can be, is not a good cardio workout.

By 3:30 this afternoon, I knew the only way to relax was to push myself. I have an amazing pair of sidestix forearm crutches, so even if my legs give out, I can use my upper body to get myself places.

So I went to a trail a few minutes from my house. My plan was to meander. There’s a really huge hill in this series of trails I’ve never been able to climb. Today felt like my day. I didn’t take the trail that sort of circles around it. I just went straight up the side. Not too sure what came over me, but I just felt like I had to conquer something.

So the above picture is from the top of the hill that I zoomed up straight up the side. You can tell it was big! It was glorious to get up there. I was amazed at my ability to take my spinny feeling and what was supposed to be a day I was going to just be sad, to climbing a hill really fast with my disabled self and most amazing forearm crutches. I felt like I somehow won at something!

So it’s not one of my huge, genuine smiles of joy. This was a smile of victory at claiming what should have been a bad day into a blessing. It’s also a peaceful smile. It’s also a smile of “oh sh!/, I have lost my leg strength completely, and I’m on top of a huge hill?” I took several deep breaths and very slowly made my way down with contentment in knowing I would make it back safely. I did!

In healing from my trauma and working as hard as possible to manage autoimmune, inflammatory, and neurological diseases these past couple years, I have had more physical strength to do things I never thought possible stemming from a mental strength that grows after I get back up from being knocked down for bit over and over. I wrote to a friend after I got home that “I was either dead or really proud of myself”.

Autoimmune diseases don’t make much sense to people as I can sleep for days on end to rise and do incredible things the next day. I have an incredible willpower to not be beat even if means giving up big opportunities for now. It doesn’t make a ton of sense to me either how my abilities fluctuate so much. I did have to use my wheelchair the rest of the night for taxing my body so much.

And the icing on the birthday cake I was grieving that I couldn’t celebrate is that a good friend let me guide her through a meditation tonight. It takes a ton of trust to allow yourself to be vulnerable enough to let someone guide you through meditation. I felt extremely honored she trusted me to do it for her.

For what should have been a day of crying and sadness turned into a day of heroic symbolism for myself and for the person I’m grieving today.

If you get the “spinny” feeling in your chest that I always thought was anxiety, perhaps do a reframe of it being a signal to take an action. It might not be powering up a hill, which I’m not sure was my best plan, but maybe it’s writing, doing something creative, texting or calling someone, or if you have nothing, you can send me an email. I absolutely love reading them and always respond!

My own birthday arrives next week. It will probably be spent alone due to social distancing measures, but I’m not dreading it. I’m wondering how I’m going to make it great? We are all in a lot of solitude, unless you are caring for family. In this heightened global time of anxiety, what can you do to have a tiny victory? What can you do to take some power back in uncertain times?

This is a time that not even the experts can predict the trajectory. I’m taking my forced isolation as a time to regroup and reinvent the person I am, well with plenty of help from my now virtual friendship network.

3D People are amazing, but I’m settling for friends on screens. Grateful to have it. Grateful to have all of you. Hopefully my restarting my blog will bring some connection and understanding into your life.

As I said, feel free to reach out to me. A person who emailed me towards the beginning of the start of my blog, a total stranger, I am now grateful to call a friend.

Take some pandemic power back. It’s ok to feel scared and uncertain and feel like your mental health is tanking. It’s also simultaneously ok to have hope and peace. It’s a human right to have joy even when everything is falling apart around you. It’s also definitely ok to nothing but focus on existing.

Love

Lizzie

I also wrote a blog piece yesterday if you missed it, and a regular reader where I discussed some of why I disappeared for a bit.

If You Can’t Say Anything Nice, Then Don’t Say Anything At All

Hugging trees is safer than hugging people!

Ok, I don’t necessarily believe that phrase. I believe people have a right to vent, be angry, even say unkind things in letting off steam. Being “nice” is definitely not necessary. I just realized I was shifting away from the core of who I am, which is an eternal optimist thrown in with a healthy dose of reality.

What I realized for me personally these past few months is that I have been hit by a lot that sent me from a mode of being strong to being a victim. It felt like my personal life and my health had fallen apart and then we had to throw in a global pandemic.

I have had 2 different neurologists agree with my meningitis diagnosis. Meningitis, unless you have had it, is a beast. It was the worst headache I had ever experienced combined with unbearable physical symptoms. The worst part was my shift in personality. I went from living a life of healthy grief for a lot while maintaining my gratitude to get by, to feeling ugly, seeing everything as ugly, and generally hating everything. I still could say I felt grateful for things, but it was a lost art as my life path.

I forgot about the wonderful people and friendships that have come into my life the past several months as the meningitis plays so many tricks in your mind. I knew I didn’t feel right. I knew I felt dark, but I also didn’t know what to do as it took awhile to get a diagnosis and subsequent treatment for it. I was really sick.

Days turned into weeks that turned into months of symptoms that grew worse.

The symptoms correlated to when I got my stem cell injections. Although there are studies of negative reports of stem cell injections, I can never say the stem cells caused what happened to me. I might have had a strange infection in my body at the time, or maybe there’s some filler or binder that was in the stem cells themselves that made a perfect storm for me. Perhaps it was just bad timing of something about to hit me regardless. I wouldn’t go back and change anything even with becoming very sick that is finally letting up a bit. Stem cells were a gift to me that I genuinely appreciated. Meningitis, no matter how it came about has been pure hell. The hardest part for me is that I will never know.

As the Coronavirus pandemic started to become very real in the United States, I didn’t think it would affect me much. I stay home a lot anyway, it felt like a welcome time to force myself to rest, and I had the thought of it being a perfect time to catch up on things around the house until the anxiety set in…

One of the things I have been extremely proud of in my trauma healing is my ability to manage my anxiety. I received a scholarship to do unlimited livestream iyengar yoga classes through a studio in Berkeley, California. I was happy to continue my yoga classes until a couple days in, I took a particularly intense, yet beautiful class that pushed my strength beyond what I knew I was capable, but at the end where you lay in a quiet state of savasana, I was on the verge of a panic attack. I felt like I had lost control. Not lose control in a pathological way like I did anything strange or hurt anyone. It was more like a mental loss of control.

Physical strength in a weakened body

So I sat with that anxiety for a handful of days. In sitting with my anxiety, I deactivated my online presence. I shut down my Facebook account and removed this blog from public viewing. As many with a trauma history can attest, feeling powerless over everything is a bit triggering. It mostly triggered anxiety, but it also put me in a victim mentality. Instead of feeling strong, I kind of wanted to hide. So I did. I honored that.

In my hiding, I continued to message a woman I befriended who is extremely ill. Our relationship is one of words. She doesn’t have the strength to talk on the phone, but she can write the most meaningful, powerful, and insightful things to me, especially when I can’t see the point in anything. Through her words and reaching out, I realized my power lies in my own actions, who I choose to be as a person, and how I react. Understanding I don’t have the power or control to fix a global pandemic, a situation in my personal life, or even fix my health (although I will never give up with my kale, yoga, and doing everything possible from my end to make it better). The peace of remembering I have complete control over myself was a major shift from the anxiety I had been experiencing to a sudden calm. My extremely ill friend was there to message me several times a day to champion my discoveries and sit with me in sadness. We also joke, laugh, and simply write about the mundane. Despite never meeting me, she knows the me of today probably better than anyone I know. There’s power in having a relationship of words that flow and flow, exactly like a pen pal of the digital age.

I wasn’t ready to have an online presence. I realized how much I hated Facebook as even though I make an attempt to be as real as possible with my health struggles and victories over them—sometimes, it still gives a false sense of who I am in what I’m able to achieve, which lately isn’t much beyond my basics. My basics take a lot of energy. Following a strict anti inflammatory diet isn’t as simple as popping something in the microwave. It takes planning, diligence, and willpower to get in my 8 servings of fruits and vegetables a day and eat fresh foods that aren’t processed. It’s not a rich, bourgeoisie thing. My grocery bill actually went down as snacks and junk food cost a lot. My ill friend pointed out to me again and again as I drug my tired body to continue to eat healthy and stretch even as I managed dealing with the symptoms of suspected Coronavirus as assessed by one of my specialists. I didn’t get tested as I would have had to go to a drive thru testing site. When you get completely winded, dizzy, and have a high fever, driving didn’t feel safe. My coughing wasn’t going to make it any easier either. I had to promise to call an ambulance if my symptoms got really bad as having a diagnosis of pulmonary sarcoidosis puts me at a higher risk of complications.

So I basically did nothing for 9 days. I know how to eat healthy for nasty disease. I was very still or asleep 20-22 hours a day until a dog would stand on me and cry to be let out or fed. I kind of resented my dog’s needs for several days, but like a small child, they have to have care that I had to provide. It’s not like with my suspected Coronavirus, I could call someone to just help me out. So many who have had it have called it a “lonely disease”. People did drop off my prescriptions, fresh foods, and even a little love.

So the pandemic that wasn’t going to bother me, hit me personally. It also hit me in other ways. I feel the emotions of others. I could feel the frenzy of my neighborhood website as people begged for ideas on stores to find the basics or vented about how anxious they were. The virus didn’t probably just enter my body, it entered my soul. I worried, probably too much about friends losing jobs. I stressed terribly over friends I wouldn’t hear back from for several days. I deeply care about people. If I send you a text asking how you are knowing fully that things have gone downhill, I expect a 5 page essay outlining all the intricacies and complexities of how your life is as I wonder. I worry. When I get back a “fine”, it almost hurts my heart as I truly want to know if I reached out. In this pandemic time, someone said to me, “Lizzie, you need to stop caring so much”. It’s probably true, but my circle is my circle and know people don’t have time to outline their lives in a time of social distancing as my friends are have hit their own panic button, well except my very ill friend. I also did my own distancing as talking became an impossible feat of losing my breath and coughing.

I’m not completely sure what the point of this blog post is except to say I had to disappear to save my own sanity as my focus had to become internal instead of distracting myself with outside problems or influences as everything had become just a little too much. Within a couple hours of activating my Facebook account again, I found myself angry. You can’t explain via Facebook that an hour outing in beautiful trees doesn’t equal wellness. It equals the fact that i needed a much deserved break from the banality of laying in my bed day after day and my smiles were genuine. They were also mixed in with barely being able to breathe and coughing fits. (Not one soul was around, so I was being a responsible social distancer!) So I don’t know if I’ll keep any kind of online presence. I know showing my reality on Facebook has inspired many. I know this blog has been a lifeline for several based on personal messages, emails, and comments.

I’m in a place of “I don’t know”. My health is precarious as no matter how beautiful the pictures are of my going out to enjoy nature for an hour where I didn’t move around much, it has left me a bit feverish, given me a sore throat again, and falsely represents how “easy” my life is.

I went out today as being holed up in my house for weeks with my human contact being through a screen has been hard. I knew I would pay a price physically for my outing but sometimes filling your soul is just as important with healing.

So this blog has been extremely important for me. It’s been my therapy in many ways. It allowed me to express my sorrow and joy. It often helped me figure out the beauty in a lot of chaos in just writing it out.

The world is shifting, and so am I. We can’t predict the world shift. I can’t exactly tell you the trajectory of my own shift. I know my WordPress subscription is paid until June at which point I’ll decide if this is my path or move onto doing other things. I have lots of things I want to do!

For me, the beauty of losing control was to gain some back. A pandemic frees us from distractions. It’s given me time to rest through my illnesses without the guilt of not being “productive”. It’s allowed me to realize that in my forced isolation, I have so many. It’s giving me time to think about what is feasible for me given my limitations. Just because I’m handed several wonderful opportunities doesn’t mean I have to or even CAN fulfill them. My life is important whether I continue to be frequently debilitated by illness, living a simple life, or create a shift in thinking through my art and writing in a more public way.

For now, I give myself a huge pat on the back for taking great care of the basic parts of life and realizing that gratitude and grace lie in sometimes the tiniest things. The world may feel like it’s spinning out of control, but the sun rises and sets each day as it has for an eternity. The sun brings me joy even when my joy is experienced in a forced solitude.

Love

Lizzie